HOT

 Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me  and for poor Dembe.

In the UK we don't do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn't work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.

The heat and Dysautonomia do not mix, I can't regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn't enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.

I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.

It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn't offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.

Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn't burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.

To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.

He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.

We hose this down regularly to ensure it is lovely and cool for him.

We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.

**

There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.

Sumatriptan positive news

Like clockwork my migraine arrived within the predicted timescale, which is every month between 18th - 22nd. It started around midnight but as I was half asleep and I didn't twig, I just thought maybe it isn't as the pain wasn't intense it just felt like my sinuses had become a bit stuffy. However by 2am it was clear with every passing minute the pain was becoming more intense. I panicked a bit thinking I may have missed my window of opportunity with the sumatriptan.

I am so thankful that I put my migraine grab bag together, it sits on a shelf beside the bed with all my medications. Inside is a bottle of water, a pint sized plastic cup, soluble paracetamol, soluble aspirin, buccastem and sumatriptan. Having it all in one place means I don't have to fumble around trying to find various medications. It is all in one place, plonk the soluble tablets in the cup, tip in the water and then take them and the sumatriptan. Then shove the buccastem between my gum and my top lip. Turn off the bedroom light and go back to sleep. 

Migraine grab bag

Previously I would take the medication I had, then spend the next couple of hours trying in vain not to vomit them all back up. By 4.30am my migraine had subsided to just a headache and I was up chatting to Jay, having a cup of sugary tea as my sugar cravings and crazy hunger kick in straight after a migraine subsides and vomiting is no longer on the cards. I did go back to bed at around 5.30am and slept a few more hours.

I really didn't feel well all day, quite spaced out and didn't quite suss out that with all the drama of having a migraine I had forgotten to take my morning medications. I was quite lucky in the withdrawal symptoms weren't that bad I just felt unwell. 

The protocol I have been following with the supplements says that you won't notice any change in your migraines ( severity or frequency ) until you have been taking them for a period of at least 3 months. So I was expecting to have a migraine this month. I had felt the warning side of a cranky bad mood ( to me it feels like bad PMT and feeling and getting angry with inanimate objects) the day before which seems to be the only warning sign that I get.  It always seems to be the day before that this strange mood hits where nothing is right and everything is conspiring against me. I have identified this now with the last two migraines now that I am tracking them with more detail. There is no food trigger as my diet is pretty similar each day to the next. With it always being within that date range I would say that it was more than likely hormone based. Despite the fact since coming off the pill in December 2019 there has been zero sign of any menses.

My migraine tracker

As usual my memory of Saturday is pretty hazy other than the fact I was ravenously hungry all day and extremely tired. I remember Sunday which is better than normal, as usually I lose a few days worth of detailed memory. Sunday I still didn't feel 100% and managed to pass out whilst trying to get on the floor due to feeling like I was going to faint. Resulting in a bruised bum and a Labrador sitting on me refusing to allow me to get up again until he believed it was safe for me to do so. The signal that it is safe, is Dembe going and getting me a toy from his toy box and wanting to play. Until then he will prevent me from even sitting up but sitting on my arm or throwing himself across my chest. This isn't something we have trained him to do but something he does instinctively and I am incredibly proud of our boy.

It is fantastic news that the sumatriptan  is working so well for me and it has taken away some of the fear that had been surrounding the next migraine attack after the one in May been just so bloody awful. I am noticing with the magnesium supplement that I am sleeping an awful lot better, which is great as for the first time in years I am not spending hours awake in the middle of the night. So it is positive news on multiple fronts for a change.

My special boy

The best dog

One of my favourite sayings about dogs is,

Everyone thinks they have the best dog.

And none of them are wrong.

W.R Purche 

Dembe since coming home with us on 11th January 2019 has proven time and time again that he is not just the best dog but an exceptional dog. Highly intelligent and intuitive especially when it comes to matters of my health. It started when he was very tiny. He would some how know that I had a migraine and would lie quietly beside me with his face pressing against the side of my face that was hurting due to the migraine. He wouldn't leave my side unless dragged away. I just put it down to him being impossibly cute but there are so many instances over the last 12 months that have made me realise that his behaviour isn't just a fluke but something very real.

Around 3 weeks after we brought Dembe home I came down with a chest and sinus infection. I was floored by it, it was probably the closest I have come to feeling like I had the flu without having it in a few years. Dembe would have been around 10-11 weeks old and full of beans. Due to the fact we were still toilet training him I couldn't go to bed, I simply didn't have the energy to be going up and down the stairs every 30 minutes ( I couldn't have done that on a normal day let alone this). So I would lie on the sofa counting down the hours until Jay would be back home so that I could crawl into bed.

A pup of this age is normally a live wire, yes they sleep quite a bit but when they are awake they are into everything. Normally Dembe would have been, however he seemed to know that I was poorly. Instead of running around playing with his toys, for 4 days straight he would lie on my feet or chest up on the sofa and sleep, as I slept. At the time I thought it was odd that such a young pup would alter his behaviour so radically. As soon as I started to be on the mend the crazy pup came back and yes sometimes it was a little too much for me as I was still feeling pretty rough but to contain all that energy for 4 days whilst I waited for the antibiotics to kick in was pretty weird.

 At the time I just put it down to a fluke, that I was projecting and seeing what I wanted to see after losing my beloved nurse Frankie. 

There have been a couple more instances over the year, where it was clear that Dembe was picking up on health stuff to deal with me. We have had a couple of dog training sessions where Dembe has wanted to just get back to me where normally he will quite happily ignore me. One night I was sat quietly on the sidelines when I suddenly lost the vision in my right eye, I knew I had a migraine brewing but as there was only 30 minutes left in the lesson I didn't see the point in making a fuss. In the end I did have to speak up though as Jay and the trainer couldn't understand why Dembe wasn't focusing on the lesson like he normally would and all he kept doing was looking back at me or attempting to get back to me.

We had the same thing happen a few weeks ago during an agility training session. Out of nowhere earlier that morning I had been hit by vertigo. I had taken my medicatiom to attempt to stop it in its tracks but my head was still spinning. I was having to be careful how quickly I turned my head. Dembe again was really unsettled, every time he was off the leash he was back at my side. One of the fellow spectators commented on it and I just said "It is because he knows I am not feeling well, he gets very protective of me if he senses something isn't right." I then went onto explain something that had happened just a week or so earlier.

To the uniformed observer this way look like a cute photo of me and Dembe having a cuddle. Although it was cute and comforting it couldn't have been any further from the truth. I had been feeling not quite right all day. Jay had just gone back to work after coming home for lunch when I had the strongest feeling that I was going to pass out ( even though I was sat down, you see I can pass out in any position it is my super power). Initially I tried to fight it by clenching my buttocks and calf muscles in the hope that this would get the blood circulating. However when I started yawning ( this is a key indicator that my blood pressure is dropping rapidly) I knew I was going to have to get myself to the floor as quickly as possible and then get my legs raised. Dembe was asleep beside me on the sofa.

I quickly got myself down on the floor and got my feet up on the coffee table. I expected Dembe to sleep through this. Instead he got up and then curled up beside my head resting his face against my face. Normally when I lie on the floor this signifies play time. I was fully expecting to be licked, trampled on and toys dropped on me as he would think this would be part of the game. However he didn't move he just snuggled beside me, I took the photos after I had been down on the floor for ten minutes as I couldn't believe that he was doing this. I tried to get up but he wouldn't let me, he had me pinned to the floor for a good 30 minutes. If his face wasn't against my face he was lying on my arm making it almost impossible for me to move.

What I find incredible is this is not something I have ever taught him to do, this is something he has done on his own. He was also just 14 months old when he did this, he is now 15 months old.

I still find it hard to believe that he is so in tune with me that for whatever reason he knew that I was very unwell at that time and needed him to look after me. Feeling that ill, whilst alone is scary. Thankfully I had my mobile phone on me as the top I was wearing has  what I call a kangaroo pouch pocket. I always try to wear clothes with pockets so that I always have my phone. I managed to get in touch with Mr Myasthenia Kid and explain what had happened I got really tearful when I explained what a wonder Dembe had been. He asked if I wanted him to come home but I said until I knew if I could sit up or not unaided there wasn't any point. Around 30 minutes after I first hit the deck I was able to sit up, resting my back against the dresser. Another ten minutes later and I made my way up to bed and spent a few hours lying down . Again Dembe behaved beautifully, he just came up to bed with me and slept beside me.

Which if you had ever met Dembe you would know what a normal active, annoying pup he can be. Who regularly crawls onto my lap and knocks the chromebook from my hands because it has been at least 15 seconds since I gave him a cuddle. Who throws his crocodile toy, well any toy of his choosing that day around the lounge and to hell with the consequences. So to adapt his behaviour on his own accord is really quite amazing to me.

This is what I am battling against at the moment trying to write the blog post

 He is not a quiet pup, he isn't massively high energy but if he wants your attention he has ways and means of ensuring he gets it. Who could resist that face peering around the computer screen.

I thank my lucky stars everyday that we were lucky enough to have Dembe choose us to be his human parents.

I do feel like I need to point out that just because of Dembe's unique ability doesn't mean I love our previous dogs Travis, Mollie, Willow and Frankie any differently. Life will always be marked in sections before the Weims, after the Weims. Life goes on but it goes on around a huge Weimaraner shaped hole. And it always will. Dembe is not a replacement but our boy and the beginning of a new chapter. He is currently our best dog, same as Frankie, Travis, Mollie and Willow were when they were with us.

Reflections

The start of a new year always makes me a little reflective. I always think that now I am in my forties I should have my shit together. When I was a teenager people in their forties all seemed to know what they were doing, were confident and self assured. Now I am in my forties I realise like everyone else my age that those forty year old's I admired were just winging it. No one has got their shit together and we all are just making it up as we go along. All that those 40 year old's had that I didn't as a teenager was life experience. I don't think there will ever be a eureka moment in my life where I feel like I have figured everything out. I think I will forever be winging it and pretending that I know what the hell I am doing.

As you get older I do think you appreciate the simpler things in life. You put home, happiness and friendships above the material things. You also start to refuse to put up with so much crap or maybe it is you finally get the courage to start putting yourself first for a change. At the end of last year I made some quite sweeping changes. I reassessed some relationships, I binned some, I reinvigorated others. I pushed myself to make an effort with those I didn't want to lose. It is funny during the hard times you really notice who runs towards you and who runs away. And there is the third group of people those that in public or on a public forum make all the right noises but do nothing practically to help.I have noticed this a lot over the last 4 years.

 Those of you who follow the blog or know me personally know that basically over the last 4 years Mr Myasthenia Kid and I have been to hell and back. Briefly ( which is a laugh as even briefly so much has happened each event is a blog post in itself) in 2016 I developed a CSF leak which left me confined to my bed for much of the year and if not in bed lying down. It made socialising very hard, several of my friends were wonderful but one in particular would make all the right noises you know the "just let me know if you need anything" and when you did ask you were met with radio silence or a long list of excuses as to why they couldn't help. I will never ever be able to repay Imogen for how she helped us during that year, looking after the dogs at the drop of a hat for 8 hours whilst I got treatment at a hospital an hour away. Same for my parents who when Imogen couldn't help would come up and drive me back down to the hospital a journey of over 100 miles. 

In 2017 we lost our dear friend of over 20 years, Andrew, in a car accident, his passing made me realise I needed to make more of an effort to stay in contact with my friends as none of us are guaranteed a tomorrow let alone a next week. In this year I also lost a family friend of many years who I would have regular conversations with via Facebook Messenger and telephone calls, although we never met in person. Later that year I was to learn my Grandmother and my dear friend Pam ( my neighbour twice and the person I saw most other than my husband) had both been diagnosed with lung cancer, Willow our 11 year old Weimaraner passed away on December 15th and it broke my heart. Due to the events of the following January I don't think we ever mourned her passing properly. Both Imogen and Heather rushed to my side that day. Another friend offered but I realised at that point that I didn't want her there at the time I was surprised by my feelings but let it pass thinking it was grief.

In January 2018 we lost both my Grandmother, despite knowing that both their diagnosis had been terminal we had lived in a bubble that it wasn't going to happen. I had many conversations with Pam, she moved between despair and complete denial. It was emotionally hard going for me, which probably sounds quite selfish and self absorbed but I challenge anyone to listen to your friend of over 20 years talk about the fact they are dying and walk away untouched. Pam passed away the same week Andrew had a year earlier, which I have always found quite bizarre, especially since Pam had accompanied Jay and I to Andrews funeral less than a year earlier.

 We had no idea then at the ticking time bomb that was contained within Pams body. Looking back now there were subtle signs that something wasn't right, she had looked really tired all the time etc a whole heap of little symptoms that added together were something deadly. Even if we had known then I doubt much could have been done but it makes me angry that mistakes were made in her care and the people that made those mistakes have got away with it. 

When Pam passed away both H and Immie rushed to be by my side again. The other friend basically told me she was coming, despite me saying that she wasn't needed. It was uncomfortable, for everyone as it was like there was a cuckoo in the nest.  I didn't know why I didn't want her there, I just knew that if I was hurting she was the last person I wanted present. I should have listened more to what I was feeling and realised that those feelings were a huge red flag. But instead I blamed myself, telling myself I was cruel and unreasonable to be feeling like that. 
Reflecting back on the situation the lesson I take away from this is don't ignore those feelings / intuitions / gut instincts. If I hadn't of ignored them I would have saved myself another 18 months of being treated like shit and only being visited when she thought other people may see her doing it. It was very much a keeping up appearances situation.

There are still a lot of emotions to process from the January of  that year. I haven't stopped crying since starting to write this and the grief has come out of nowhere as I certainly wasn't feeling sad before I started writing today.

In the July of 2018 my mum was diagnosed with ovarian cancer a very rare type at the same time I had stuff going on in my life that was extremely stressful. I was already suffering from terrible anxiety and depression after losing by now 5 people from my life and one dog ( in the February I lost a school friend who I had known from the age of 11 and we used to have regular chats on social media, just last night I thought I must ask Jon what planet I can see in the nights sky currently, as Jon had bought himself a telescope not long before he passed - totally unexpectedly and I had to remind myself that he isn't here). I struggled to get up and out of bed as the stress was doing a real number on my chronic health conditions. I was passing out frequently and had issues with ptosis. The heat of the summer didn't help either.

My mum then had major surgery in the August, in the September we had good news that although what had been removed was cancer, it was tiny, the size of a pin head and very unlikely to return. She is currently in remission, no one is cancer free until they have been 5 years clear. She has regular checks at the hospital and will do for another 3 years.

I finally thought that we may get some peace, after all what the hell could happen to us next? Surely the universe was done toying with us now? But no, 2018 was going to end badly and 2019 wasn't going to start any better. On 29th December 2018 we lost our beloved boy Frankie aged 12 ( a Weimaraner) and his Mum Mollie (Weimaraner) followed him over Rainbow Bridge exactly a week later on January 5th 2019 aged 14. Both had incredibly long lives for the size of dog they were but at the time it felt like my world had imploded. I had spent every day with my dogs since 1st June 2008 ( except for hospital stays ) They were a huge part of my life and most of the time the only company I had except Jay.  I didn't know that I could be in such emotional and physical pain and yet still wake up day after day. I thought Mr Myasthenia Kid was going to drop dead from a broken heart he looked so fragile and  broken. Even with Dembe our Labrador puppy coming into our lives on January 11th 2019, we were struggling.

This was where I noticed this friends  persons absence even more, no messages checking on how I was doing. No card, no flowers, no visit. Yet again H and Immie were there by my side, along with Paul, Pam's partner. I will be forever touched by Paul coming over on the Sunday after Frankie passed and then coming over again the following weekend when Mollie passed. He sat and shed tears with us and told us not to worry that Pam would be looking after them until we all met up again.

 I had cards and flowers from friends and cyber friends and yet no call to check how we were, beyond the initial messages of me telling you what had happened. That is when the penny finally dropped, that when I needed you, you disappeared as you had done so many times before, unless there was an opportunity for you to be seen as a "good" person. There were so many people I only knew on Facebook who came to visit to check that we were ok or who messaged me out of the blue. I have never felt love like it, so many people hugging us, looking out for us, physically being present. 

When Dembe arrived oh my goodness, so many visits. I have never known a puppy get so many toys and presents. I had baby gates offered within minutes of me asking on Facebook if I could borrow some, the same with crates etc. Nothing was too much trouble for people. It was overwhelming and it was something I have never experienced before and I am so touched by all those people. However it made this persons lack of action / concern even more painfully obvious. That hurt, even with all the pain I was in already the fact that we could all be so easily forgotten was another huge red flag.

Initially I made excuses,  maybe I hadn't said I was struggling? Maybe you didn't realise I was grieving? Maybe you didn't understand the depth of my grief? But even to the village idiot it would have been glaringly obvious. Contact over the year became less and less. It felt more and more like it was one way traffic which indeed it was. I was lucky when I messaged you if I got more than a couple of sentences out of you. Again I made excuses, you were busy with your new life now. You certainly made me feel like I was interrupting you living your best life. When it got to 4 months since I had last spent any time with you and even longer since we had spent any time alone, the decision was made. I had waited a month at that point for a message to be answered. I snapped. I was faced with the prospect of you turning up on my birthday and I knew I couldn't pretend for 5 minutes let alone several hours that everything was ok and that I was grateful for the few crumbs of attention you had thrown my way.

You would have never put up with being treated like that by anyone, yet I was just supposed to accept this? The last 2 years had passed in a haze of grief but I was starting to feel stronger. I knew that your behaviour  was now emotionally damaging to me. I couldn't move forward if I was going to continually wound myself, wondering what I had done wrong, why I wasn't good enough or why you felt you could take advantage of my good nature. So I ripped the band aid off and called time, reasonably amicably. I had been hesitant about hurting you when it was clear from your actions you had no concern about hurting me.

I suppose I am reflecting on all this as that is what the new year does. December and January are full of anniversaries of people and pets passing they are hard months. It's only now on 22nd January that I feel like the weight has been lifted . That I realise that the last few years I have been operating / functioning with a low level depression going on in the background. That the anxiety has lessened enough for me to see things clearly.

 You had changed or maybe the real you had come to the surface? Perhaps I chose not to see the real you or the nasty comments you made on a regularly basis. I put those down to you being verbally clumsy despite the fact you claim to be a writer. I realised I had put up with far more than I had ever credited myself with. I was right to call time and that belief is unshakeable now. I'm not the only one that has noticed that you have changed, grown colder and more bitter than you have ever been. I feel sorry for you as your world is shrinking and you are so full of yourself you can't see it. One day you will come crashing down to earth with a bump and you will be all alone. Maybe you want it that way, so you can perpetually be the victim?

I reflect back and realise I should have found the strength earlier. That I should have seen the pattern that I could never depend on you. That you liked to take and use, yet giving absolutely nothing in return.  You may think you have everybody fooled but truthfully more and more of us are seeing through you. I hope you find some peace because only someone who is utterly miserable with their own life finds joy in hurting others.

Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor's surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse's behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must've turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it's basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

Blind Panic

By the time this blog post is published hubby and I will be up and getting ready for our trip to The National Ehlers Danlos Unit in Bath, a good two-hour journey to a hospital that has no parking. I am particularly looking forward to hubby losing his cool whilst trying to find a place to park.

Last week I was unable to write a new blog post so took the easy way out and re-blogged a piece from last year. I hate doing that but if I hadn’t there would have been nothing at all. Last week was filled with massive bouts of insomnia / painsomnia (if you're not familiar with that term it means being unable to sleep due to high levels of pain) add in getting my hair cut on the Monday and a trip to the dentists on the Wednesday, I was good for nothing.

I can’t lie I have a terrible phobia of the dentist, which is bad when EDS has really done a number on my teeth. Apart from my front teeth every tooth in my head has a filling, my front teeth are losing their enamel and are also crumbling. I should be a regularly attending patient but three years ago I stopped going due to my health being bad and never arranging an appointment to go back. The dentist that I had built up a good relationship with, that knew about EDS and would listen when I told her to stop has left to work in the private sector. If we could afford to see her, I would but we don’t have that kind of money, so I am now having to “break in” a new dentist.

The last appointment I attended had been on my birthday, it didn’t go well as I was so tense I could barely open my mouth and he seemed not to believe me when I told him he was hurting me. Not a great start when all he was doing at the time was examining the condition of my teeth. I learned from this appointment I needed two fillings as I had developed large cavities in my rear molars. One on the right side and one on the left, the cavities were so large and deep they could be seen on the x-rays he took. You would be correct in thinking that I was not looking forward to getting them sorted out.

Before I left the appointment on 1st November I went through with him that I needed a local anesthetic without adrenaline, one with adrenaline will cause me to face plant when leaving the dentist’s chair, as one previous dentist found out many years ago before I had my diagnosis of EDS and PoTs. Due to getting my diagnosis at 37, it means I have endured more than my fair share of painful dental procedures, with dentists shouting at me that I “couldn’t possibly feel anything” because I had been given local anesthetic. It’s not only dental procedures that have been plagued by pain but also small procedures such as having part of my toenail removed and a lumbar puncture. Until the diagnosis I got shouted at a lot by the medical profession, simply because they didn’t believe that the local anesthetic they had injected wasn’t working. Now although they acknowledge that anesthetics don’t work properly they underestimate how long it will last for.

I knew in my heart I was going to be in trouble yesterday when the dentist administered the injections for both fillings at the same time. I wanted to pretend it was going to be ok and that it was a situation where it was mind over matter. The first filling went ok, although I really could have done without the running commentary of what he was doing. I spent the whole of the first filling trying not to vomit which is my normal feeling when I hear the dentist’s drill. I really didn’t like it when he told me that the next bit of equipment was going to vibrate a lot making my tooth feel like it was going over cobbles. Another wave of nausea hit me when he told me that he was removing the “soft stuff, to get down to a good hard base”. I wanted to tell him, I really didn’t want to know but as I had his hands in my mouth and the dental nurse sticking the suction device to my tongue constantly, he wouldn’t have worked out what I was saying anyway.

Filling number one went off near perfectly, this was a good dentist experience, other than the running commentary. I was a perfect patient apart from the hyperventilating at the start and gripping the armrests until my knuckles went white. I didn’t find my happy place, which I try to do when stressed to the max during medical procedures. I am pretty good at meditation and can drop off during MRI scans because I just go into my head, the dentist is a different story coloured by so many bad experiences.

I was pleased, the dentist was pleased but it was short-lived due to filling number two. I should have said something or made some sort of guttural noise (as you do when the dentist has your hand in your gob) when he blasted the tooth with cold air and then stuck the metal prong into it. I tried to convince myself that I was imagining the sharp stab of pain. Concentrating on my breathing, I braced myself for the drill, trying very hard not to panic.

Within seconds of the drill hitting my tooth, I entered what can only be described as a state of blind panic. Until yesterday I had presumed that the state of blind panic was down to a weak mind, an inability to control one's fears when faced with them. I have a fear of heights yet know that if my life depended on it I would overcome my fear, I really don’t like daddy-long-legs or spiders yet will deal with them if I am alone in the house. I am scared of them but I would never describe it as a phobia. People tend to throw the word phobia around quite a lot but I can say hand on heart that my “fear” of dentists has now developed into a phobia. Yesterday I experienced a state of blind panic, where I couldn’t think clearly nor see the danger I could have potentially put myself in. I know now that it is nothing to do with self-control or a weakness of mind and I unreservedly apologise to those people I have doubted in the past.

As soon as the drill hit my tooth, I had immense pain (I know my pain threshold for dental procedures is considerably lower than my normal pain threshold) without thinking I grabbed the dentist’s drill and threw it out of my mouth. I immediately sat up and had the dentist not put his arm across my chest I believe I probably would have attempted to leave the room via the window opposite me. It all happened so quickly that there was no thinking involved, I just wanted the pain to stop and to leave the chair. The dentist was really freaked out but didn’t lose his cool with me. He did say “never do that again, it’s so dangerous, you could have really hurt yourself” in a very quiet voice. I apologised and then burst into tears, not my usual tears which are quiet and restrained but full on chest heaving sobs where I could barely speak. The dental nurse gently rubbed my arm and dried my eyes. I cried so much that the shoulders of the top I was wearing were wet. When I later looked at myself in the car on the way home, I resembled something like Alice Cooper with mascara all down my face.

I think at this point the dentist didn’t think I would allow him to continue but rational Rach walked back into the room. As long as I had adequate pain relief I would be able to continue. I had told him on 1st November that local anesthetic wears off quickly with me and he would only have a small window of opportunity to get the job done. I guess sometimes they don’t believe their patients and need to see it to believe it. I wish they would take what we say as the truth because if he had, I wouldn’t have had to go through that.

I often joke that it’s been a good appointment if the dentist still has all his fingers, I guess now the joke will be it's been a good appointment if I haven’t grabbed the dentist's drill or tried to escape the chair mid appointment.

The dentist was a little surprised when I could feel the third injection go in, that part of my gum should have been numb but it wasn’t and proved the point that the original injection for the second filling had worn off. He waited a few minutes before beginning work again. I told him before he started that I would sit on my right hand so that should the urge to grab the drill come over me I physically couldn’t. We agreed that should I feel anything I was to raise my left hand and he would stop. This was the system I had in place with my last dentist and it had worked well, although I have never had to sit on my hand before. But then I have never ripped a dentist’s drill from my mouth either.

After all that drama the second filling went off smoothly. I left the dentist’s without face planting but by the time I got home I needed to just crawl into bed. Today I feel the same but my back is so sore from having so many days in bed lately that I am hanging on for as long as possible before returning.

I don’t have to attend the dentist until March 2017 and that is to see the hygienist, my teeth still need cleaned. I am apprehensive about it as it seems all the nerves of my mouth are on the outer edges of my teeth. At least the anxiety of the dentist’s appointment and the recovery time needed after this little jaunt out have stopped me thinking about my trip to Bath. every cloud eh?

Could it be Postural Orthostatic Tachycardia Syndrome - PoTS?

I posted this in August last year. Due to having a crazy week (Insomnia/painsomnia)  and a dentist's appointment today I find myself too exhausted to write a new blog post.

I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.

My own diagnosis has moved away from "just" PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn't a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance - my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp's and take this with you at your next appointment.

The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night's sleep. That was back in 2006 and which I now know is reactive hypoglycemia (blog post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions. I would also on a regular basis get very lightheaded when changing from a sitting to standing position.

So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.

By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn't exist. For more info on my experience of the Tilt Table Test please click here as I don't want to bore you by repeating myself.

My main symptoms at the time of diagnosis were as follows

1. palpitations
2. feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
3. feeling like an elephant was sat on my chest and not being able to breathe properly
4. racing heart rate every time I changed position, even rolling over in bed.
5. greying out, especially after eating.  (My peripheral vision greys out)
6. Insomnia (BIG TIME)
7. Dizziness
8. Migraines and shockingly bad almost migraines
9. Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
10. Chest pain (too many times to mention I thought I was going to have a heart attack)
11. Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
12. Fatigue

This list probably doesn't cover all my symptoms and unfortunately many PoTS symptoms also merge into EDS symptoms as in the gut problems and bladder problems that many of us with both conditions have. It can get very difficult to differentiate the two. For a full list of symptoms please click here.

So what can you do if you suspect you have PoTS?

I can only base this on how I went about getting my diagnosis but it is the same advice I give everyone who asks my advice. 

Firstly get hold of a decent blood pressure monitor especially one that can also take your pulse at the same time. Here is a list of blood pressure monitors that have been validated by the British Heart Foundation as accurate enough to monitor your blood pressure at home. If you can afford it get one with a memory so it records your readings so that you can't be accused of making the numbers up. It is important to understand that blood pressure does not play an important part in getting a diagnosis. Some people with PoTS have normal blood pressure, some have low and others have high. Why you need the BP monitor is so that you can start tracking your pulse and your blood pressure. If you can't afford a blood pressure monitor for whatever reason, a pulse oximeter ( a little device than can read your pulse by clipping onto your finger) is the next best thing and you can pick them up online from as little as £10. 

Please remember people with PoTS tend to have very cold fingers (and toes) so before using a pulse oximeter ensure your fingers are warm enough to provide an accurate reading. Before my second tilt table test (yes I was stupid enough to do it twice) I had to sit with my fingers in a bowl of warm water as the pulse ox couldn't get a reading.

Secondly understand what PoTS is!

PoTs is a rise in your pulse / heart rate of at least 30 beats per min (bpm) or hitting 120bpm or over, within the first ten minutes of standing. In children (up to the age of 19) the rise needs to be over 40bpm. If your heart rate doesn't increase by 30bpm or over 120bpm within the first ten minutes of standing it is unlikely to be PoTS. 

When a normal person goes from sitting to standing their pulse / heart rate will increase on average by 15-20bpm. Within a minute or so their heart rate will go back to normal. A person with PoTS could start with a baseline heart rate of 80bpm and on standing increase to at least 110bpm. Then as they continue to stand their pulse could increase further. I know on my own tilt table test my own heart rate increased to 150bpm, unfortunately I don't know what my baseline measurement was. Usually my pulse is in the 80's and if that was the case I certainly managed the increase of 30bpm and smashed the 120bpm threshold.

Because many people (but not all) with PoTS also seem to have low blood pressure that is why I recommend getting a monitor. It helps to see what your blood pressure and pulse are doing after specific triggers such as climbing the stairs, raising your hand above your head, eating - particularly carb loaded meals. Many people with PoTS find their symptoms are much worse after eating heavy carb meals, so it is recommended to eat high protein low carbohydrate meals which don't cause postprandial symptoms.

Thirdly conduct your own poor man's tilt table test.

You maybe wondering what on earth is a poor man's tilt table test, that is ok I was left scratching my head after first hearing this term on a forum called DINET. Because none of us own our very own tilt table designed for testing people for PoTS amongst other things, we can replicate how we will respond to the actual test by completing the poor man's tilt table test and some gp's who are PoTS savvy will do this in their consulting room or at the very least conduct a standing test.

To conduct a poor man's tilt table test, you need somewhere comfortable and relaxing to lie down, without interruptions and preferably away from harsh or natural light. A wall to stand against which is adjacent to the relaxing lie down area however if you don't have this don't worry you can still conduct the test. You also need your bp monitor / pulse ox and a handy sidekick to record your test results. Also your sidekick can rescue you should you faint whilst completing this test so please be careful and do not attempt to complete it without having someone with you. Please also ensure that the area is safe should you decide to face plant, so free from things you could hurt yourself on. Cushions or pillows on the floor can help prevent injury!

To start the test you need to lie down and relax, no talking, no interruptions for 20 minutes. If you can darken the room in anyway before starting the test do. At the end of the 20 minutes with as little movement as possible take your blood pressure and pulse readings. These are your base line readings and what you will use to compare against the reading you get during the test.

Once you have your baseline readings stand as quickly as you can placing your back against the wall. The wall just helps prevent you from moving, people with PoTS tend to be natural fidgets because we either faint or feel like we are going to faint. Moving keeps the blood flowing, we don't want you to do that whilst you are standing up as it may mess up the results. If you don't have a wall to prop yourself up against try and keep your legs as still as possible.

Then at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 minutes take readings of your blood pressure and pulse or get your trusty assistant to do it. After the ten minute reading has been taken, sit down get your legs elevated and have a drink of water. You may notice that your feet / legs have gone a nice shade of red or purple. Don't be alarmed this is called blood pooling and is very common with PoTs.

Now take a look at your readings if it shows an increase of 30+ bpm / 120 bpm this is positive for PoTS. Do not despair if it doesn't show PoTS one negative poor man's tilt table test does not mean it's not PoTS, it may just mean you weren't particularly symptomatic that day. Try to complete the test on a day when your symptoms are more evident.

Other things that might show during a poor man's tilt table test are things like orthostatic intolerance ( your blood pressure goes below 90/60 on standing), you may have also fainted, if so I am sorry. The blood pressure readings could also reveal if you suffer from hyper-PoTS, which is where you have high blood pressure and PoTS. This needs to be treated differently to "normal" PoTS as most doctors will avoid giving you medication that will increase your blood pressure.

If you can't for whatever reason do the poor man's tilt table test you could perhaps try what is known as the standing test. Instead of lying down you sit down for 5 to 10 minutes to get your baseline pulse and blood pressure readings and then stand for as long as you can. Taking your readings at the same intervals as the poor mans test. This can also show PoTS. Remember PoTS stands for postural (position) orthostatic, tachycardia (fast heart rate / pulse), Syndrome (collection of symptoms and no two patients are alike).

What to do next?

Print off the gp's guide from http://www.potsuk.org/gp_guide and book an appointment with your gp or a doctor at the practice who has been the most supportive. Sometimes these aren't necessarily the same. Whilst waiting for your appointment take a look (if you are in the UK) at the Doctors list on the same website. This will give you an idea of who you can ask to be referred to, not all cardiologists are knowledgeable in the area of PoTS so it makes sense to see an expert, rather than someone who will give you the run around. For international readers DINET also has a Physician's list.

If you have a disappointing gp visit and they still will not listen to you even when provided with your own test results and the gp guide, do not give up. Try every doctor at the practice if you have to and if that doesn't work contact the practice manager. If you get no joy after all of that try reaching out to one of the many UK facebook PoTS groups. They have members all over the country and they maybe able to help you find a new gp practice with more sympathetic gp's who are aware of the condition. 

If you have a disappointing consultants visit because despite your request of being sent to a specific doctor who is knowledgeable about the condition and you didn't get to see one, you have a right to ask for a second opinion and ask once again to see one of the doctors named on the potsuk.org website.

You will get there in the end!

Most doctors will not confirm a diagnosis of PoTS without conducting a Tilt Table Test, ECG and possibly 24 hour blood pressure / heart monitoring. I was diagnosed on my tilt table results alone possibly because from 2007-2011 I had so many other investigations conducted they decided nothing more was needed.

The good news is that many people recover from PoTS especially if they have primary PoTS. Primary PoTS is usually caused by pregnancy, a virus, trauma or prolonged bed rest. Astronauts suffer from PoTS when returning to the Earth's atmosphere and when their bodies re-adjust to the Earth's gravitational pull their symptoms disappear.

Teenagers who develop PoTS also have a high chance of growing out of it. Researchers believe that teenagers develop PoTS due to the hormonal changes and growth spurts they are subjected to. Patients like these tend to grow out of their symptoms by their mid- twenties.

Patients with secondary PoTS, so PoTS that has happened due to a primary condition such as cancer, autoimmune diseases (like M.S, Lupus, Sjogrens), Ehlers Danlos Syndrome can also look forward to on the whole having the condition managed through medication and lifestyle changes (exercise, increased fluids, salt, adequate rest).

However I would be remiss if I didn't state that there are patients like me that have refractory PoTS (it doesn't respond to medication) and go onto develop more issues relating to our autonomic nervous system. We are the minority though not the majority. I don't want to scare anyone who has just started on this journey I just want to be truthful.

My symptoms now are pretty much the same as when I first started on this journey with PoTS / Dysautonomia. I still have Ptosis on and off which no one has ever been able to explain. I still have issues with my breathing, fatigue, syncope and pre-syncope. A good day means that my heart isn't continually feeling like it is fighting out of my chest on every change in posture. A bad day means not being able to sit up in bed without feeling faint, my heart rate not dropping below 100bpm even at rest. 

With my combined conditions each day is very much different with a new set of symptoms to overcome. It is exhausting, it makes me angry, it makes me sad and quite a lot of the time it makes me laugh because my body is just so screwed up!

One last thing.....if you are diagnosed with any type of tachycardia, including PoTS and you hold a driving licence you must inform the DVLA. You can do that via this Link. You will also need to contact your car insurance providers.

Another great source of information is Stars another charity which helps people suffering with a variety of conditions including PoTS.